"Ed's Story" | Performed by Teon Sewer

Summary

This moving narrative tells the story of a pastor diagnosed with ALS, chronicling his journey from fear and despair to finding purpose and hope. Despite the progressive nature of his illness, which impacts his ability to move and speak, he discovers inspiration through the resilience of friends like JJ, who faced ALS with courage. The speaker's reflections emphasize the importance of relationships, forgiveness, and living in the moment. He learns that life isn’t defined by how long one lives but by how they spend their days. His story highlights faith, gratitude, and the strength found in embracing each day, even in the face of terminal illness.

Takeaways

• 😀 The speaker loves being a pastor, enjoying activities like teaching, officiating weddings and baptisms, and helping people during both good and bad times.
• 😀 Christmas is particularly significant to the speaker as it represents family, friends, and joy, but also marks the time they learned about their ALS diagnosis.
• 😀 ALS (Amyotrophic Lateral Sclerosis) is a progressive disease that affects swallowing, breathing, and eventually leads to death. The speaker was given five years to live after diagnosis.
• 😀 The ALS Ice Bucket Challenge raised $86 million, which is a significant increase from the previous year, but it was criticized as a 'middle-class wet t-shirt contest' for clicktivists.
• 😀 Raising awareness about ALS is important, and the speaker suggests that sharing the stories of those afflicted can make a bigger impact than superficial acts.
• 😀 The speaker recalls a pivotal moment when a friend, Billy, reminded them that 'it ain't over till it's over,' inspiring hope despite the grim prognosis of ALS.
• 😀 The speaker reflects on the fear of dying from ALS but also shares the peace they found through a deep connection with a fellow ALS patient, JJ.
• 😀 The speaker's journey as a pastor led them to switch from a career in chemistry to one in ministry, feeling called to care for people and do God's work.
• 😀 After being diagnosed with ALS, the speaker struggled with the thought of no longer being able to serve as a pastor, but eventually found peace in accepting their new reality.
• 😀 The speaker emphasizes the importance of forgiveness, suggesting that reconciliation and humility are more crucial than seeking a cure for ALS, as relationships with others and God are central to life.

Q & A

What is the main theme of the speaker's story?

The main theme is the intersection of faith, mortality, and purpose. The speaker reflects on living with ALS, emphasizing the importance of relationships, acceptance, and gratitude in the face of a terminal illness.

How does the speaker describe their initial reaction to being diagnosed with ALS?

The speaker initially struggles with the diagnosis, particularly the idea of losing their ability to do the things they love, like preaching and serving others. They describe a sense of fear and a desire to withdraw from social interactions.

What role does faith play in the speaker's journey with ALS?

Faith plays a central role in providing the speaker with strength, purpose, and perspective. It helps them find peace in difficult moments and stay focused on helping others, even as they confront their own mortality.

Who is Billy, and how does his conversation impact the speaker?

Billy is a friend who calls the speaker and, in his distinctive New York accent, tells him that 'it ain't over till it's over.' Billy's words inspire the speaker to find hope and continue living with purpose, despite the diagnosis.

What significance does the speaker place on relationships, especially in times of illness?

The speaker highlights the importance of relationships in providing comfort and support. Their bond with others, such as their friendship with JJ, illustrates how sharing struggles can lead to deep peace and spiritual connection.

How does the speaker reconcile the fear of dying with their faith?

The speaker expresses that while they are not afraid of being dead, they are fearful of the process of dying. Through faith, they learn to embrace the present, finding peace and purpose despite the fear of what lies ahead.

What lesson does the speaker learn from their relationship with JJ?

The speaker learns from JJ that even in the face of death, living with hope and pursuing joy is essential. JJ's decision to take a road trip in a Corvette before his passing exemplifies living fully, even when death is imminent.

What does the speaker say about forgiveness?

The speaker believes that forgiveness goes beyond an idea; it requires humility and acknowledgment of one's wrongs. They emphasize the importance of reconciliation and mending relationships before it’s too late.

What impact does ALS have on the speaker's ability to work and serve others?

ALS gradually takes away the speaker's ability to perform their pastoral duties. Despite this, they continue to help others, focusing more on individual relationships rather than large crowds, finding purpose in these one-on-one interactions.

What is the speaker's perspective on the future and living with ALS?

The speaker is not focused on how long they have left but on making the most of the time they have. They express gratitude for each day, acknowledging that even though ALS cannot be cured, they can still live with purpose and help others.